for the Community Cerebral Palsy

Document Sample
for the Community Cerebral Palsy Powered By Docstoc
					An Outline of Administrative Guides
for the Community Cerebral Palsy

                                                 different clinical patterns and disease
   "The chief bottleneck to more ade-            pictures. Arbitrarily, in this presenta-
   quate care (of the cerebral palsied           tion, the term cerebral palsy is limited
   child) is not funds, but qualified            to conditions resulting from damage to
   personnel," concludes this writer.
   "At present recruitment is a greater          the growing or developing brain and
   problem than finding suitable            excludes disorders of muscular control
   training facilities."
                                            which occur in adult life, such as hemi-
                                            plegia from arteriosclerotic vascular
 + The Committee on Child Health of            The child with cerebral palsy almost
 the American Public Health Associa- always is a child with multiple handi-
tion, with the help of many persons caps (Table 1).
throughout the country, is preparing a
guide for public health administrators         Table 1-Cerebral Palsied Children
 on community programs for cerebral
                                                Estimates of Proportion Having Other
                                                    Disabilities than Neuromuscular
palsied children. Partly from that man-                     Disturbance Alone
uscript there has been selected for pre-                                           Per cent
sentation here information on certain         Speech defect                         50-75
outstanding questions or problems that        Mental retardation                 About 50
                                              Visual defect,
are frequently faced by the public health        other eye disturbances, or both " 50
administrator. An attempt is made to          Convulsions                          " 35
answer some of the questions, or at           Hearing impairment                   " 25
least to present a point of view or com-
posite of experiences. For brevity's           The frequency of multiple handicaps
sake, the material is organized in outline among cerebral palsied children imme-
form.      /                               diately raises the question in the mind
    Prevalence-As nearly as can be         of the administrator concerning the
determined from existing studies, there advisability of giving care to cerebral
are between 1.5 and 3.0 cerebral palsied palsied children together with other
persons of all ages per 1,000 total popu- handicapped children or by themselves.
lation. It is estimated that cerebral In combined programs, common serv-
palsy results in one of every 170 live- ices can be utilized more efficiently for
born infants.                                 Dr. Wishik is professor of maternal and
    Definition-Cerebral palsy is a child health, Graduate School of Public
group of conditions resulting from Health, University of Pittsburgh, Pittsburgh,
brain disturbance and having in com- mitteeThis paper was reported for the Com-
                                                    on Child Health of the APHA and
mon a disorder of muscular control. presented before a Joint Session of the
                                           American School Health
Since the condition is caused by a num- Dental Health, Maternal Association and the
ber of different and often unrelated fac- and School Health Sections of Child Health,
                                                                             the American
tors operative before birth, during Public Health Association at the Eighty-first
birth, or after birth, there are many Annual Meeting in New York, N. Y., Novem-
                                           ber 10, 1953.
                                                 CEREBRAL PALSY PROGRAM VOL. 44                     159
   Table 2-Elements of Community Program for Children with Cerebral Palsy
                      Desirability of Separateness or Combination with
                      Activities for Other Types of Handicapped Children
A. Should be combined                             B. Usually should be combined, but may
    Case finding                                      be separate, depending on numbers
    Case register                                     and other factors
    General health supervision                         Specialized medical supervision
    Otologic and ophthalmologic consulta-              Physical therapy, occupational therapy,
      tion and care                                      and speech therapy
    Furnishing braces                                  Dental care
    Surgery                                            Special daytime education
    Daytime education in regular classes               Education in residential school
    Vocational aid                                     Counseling, social work, or psycho-
    Institutional care for mental retardation            therapy to child or
    Long-term institutional care for severe C. Should be separate family
      physical disability                              Specialized diagnosis
    Public education                                   Research (may be combined)
    Prevention                                         Professional training (may be combined)

different types of children. For exam-                 of different ways in which cerebral
ple, both children with cerebral palsy                palsied persons have been classified.
and with poliomyelitis can be treated                 Each method is useful to the administra-
by the same physical therapist. The                   tor or  therapist for one or another
argument in favor of the specialized                  purpose (Table 3).
service is that the child with cerebral
palsy presents problems of such com-                     Table 3-Methods of Classifying
plexity and special nature that a com-                             Cerebral Palsy
pletely separate approach is necessary.                   Descriptive  nature of neuromuscular dis-
   It is here suggested that neither                        turbance
method is appropriate for all the needs                   Parts of body involved
                                                          Associated handicaps
of the cerebral palsied child. The                        Severity of involvement
various services required by one or                       Anatomic site of brain lesion
another cerebral palsied child are here                   Degree of tonicity
classified according to efficiency and ad-            Educational
vantage of separate or combined
organization (Table 2).                                 The classification (Table 4) devel-
   Classification-There are a number                  oped largely by Winthrop M. Phelps,
                          Table 4-Classification of Cerebral Palsy
                    Descriptive Characteristics of Neuromuscular Disturbance
          Type                               Characteristics
                         Tendency of muscles to contract when          put   under
         Spastic         tension (stretch reflex)                                       45-65
         Athetoid        Involuntary, incontrollable, irregular      motions

                         with varying degrees of muscle tone
        Ataxic           Disturbance of balance and postural      sense                  5-15
        Tremor      Resistance       to   slow movement                                  5-15
        Mixed types
 (Adapted from M. Perlstein, M.D.)

M.D., is the most commonli y used one grouping associated disabilities, and
and helps in differentiati ng needed identifying etiological factors.
therapies and educational placement,                 Traditional nomenclature has grown
                                                  up like Topsy. A diplegia can be a
Table 5-Classification of Ce2 rebral Palsy paraplegia or not. A hemiplegia (half)
   Parts of Body Involved in Neuw romuscular      has as many limbs involved as a diplegia
                   Disturbance                    (twice). The Greek word "paraplegia"
Para plegia       Legs only         (Spastic)     means "hemiplegia" (Table 5).
Di plegia         Legs mainly,
                     arms slightly (Spastic)         The terms require additional descrip-
Quadri plegia Legs more             (Spastic)     tion to locate the affected limbs. A
                  Arms more         (Athetoid)    more logical terminology is offered
Hemi plegia       Arms more         (Spastic)     in Table 6.
Tri plegia        Both legs,
                    one arm         (Spastic)        The classification shown in Table 7
Hemi plegia       Arms more         (Spastic)     is helpful in assessing community needs,
   (double)                                       estimating required types and numbers
Mono plegia       (Rare)            (Spastic)     of professional personnel, and in plac-
  (Adapted from M. Perlstein, M.D.)               ing children.
                                                     The following is of interest chiefly to
Table 6-Suggested Classiification              of the physical therapist and occupational
 Cerebral Palsy and Paralytic Conditions therapist (Table 8).
                  Limbs Affected
      Monoplegia                                       Table 8-Classification of Cerebral
           Right brachial                                            Palsy-Tonicity
           Left brachial                                     Hypertonic or tension types
           Right skelial *                                   Normotonic types
           Left skelial                                      Hypotonic or "atonic" types
          Left                                          Etiology, in so far as known, aids the
          Brachial                                   administrator to plan preventive meas-
      Triplegia                                      ures and education, as is shown in
          Di-brachial and right skelial              Table 9.
          Di-brachial and left skelial                  This classification not only helps in
          Di-skelial and right brachial              development of appropriate educational
          Di-skelial and left brachial
      Quadriplegia                                   programs, but gives basis for introduc-
                                                     ing medical treatments into school
 *   Derived from Greek word "Skelos," meaning leg   settings (Table 10).
                            Table 7-Classification of Cerebral Palsy
                         Severity of Involvement and Response to Treatment
                                                                                              Per cent
Mild               Ambulatory and self-helpful         Need little   or no   special
                                                         treatment                              20
Moderate          Difficult speech, impaired self-     Need and can probably profit
                     help or ambulation, or both         from treatment; usually out-
                                                         patient care                           50
Severe             Severely incapacitated and          Treatment may not rehabili-
                     bedridden                           tate; usually inpatient       care     30
 (Adapted from M. Perlstein, M.D.)
                                                CEREBRAL PALSY PROGRAM VOL. 44                    161
Table 9-Classification of Cerebral Palsy                 Table 11 Cerebral Palsy Services
                       Etiology                            Desirable Geographic Accessibility
Congenital                                            A. Must be local to be of use
  malformation                                             Case finding
                                                           General health supervision
                          Prenatal                         Direct physical therapy, occupational
                           (e.g., cord obstruction,         therapy, speech therapy
                           abruptio placenta)             Dental care
Perinatal anoxia          Natal                           Recreation
                           (e.g., breech, narcosis)       Counseling, social work,     or     psycho-
                          Neonatal                          therapy
                           (e.g., atelectasis,            Daytime education (regular   or   special)
                           tracheal obstruction)          Public education
                       Natal                          B. Preferably organized on a
Trauma, toxicity, or (e.g., dystocia, toxe-              regional basis
  vascular disturbance mia, hemorrhage, pre.              Specialized diagnosis
                        cipitate, caesarean)              Specialized medical supervision
                       Childhood accident                 Indirect (consultation or supervision or
                                                            both) physical therapy, occupational
Specific toxicity or        (e.g., encephalitis,            therapy, speech therapy
  infection                 lead encephalopathy)          Furnishing braces and other appliances
 (Adapted from Ml. Perlstein, M.D.)
                                                          Residential education
                                                          Vocational aid
   Certain services, such as education,                   Institutional care
may be needed almost every day and                        Research
                                                          Professional training
therefore must be near the child's place
of residence. Other services, such as a
specialist's consultation, may be called              services and can constitute valuable
upon infrequently and could therefore                 indexes for further planning (Table 12).
be obtained from a distance. The ad-                     Case finding is everybody's job. It
ministrator must differentiate those                  rests upon sound general community
services that can be organized region-                services in health, education, and wel-
ally rather than locally and still be                 fare and it requires orientation of pro-
considered a reasonable part of the                   fessional workers in those programs to
community program for handicapped                     the needs and potentialities of cerebral
children (Table 11).                                  palsied children. Over and beyond the
   Preplanning community surveys are                  "broadside" case finding, the adminis-
costly and often not too productive. In               trator can aim at specific targets. In
the absence of a broad survey, consider-              so far as we know the common pre-
able data can be derived from existing                cursors of brain damage, patients with

     Table 10-Classification of Cerebral Palsy Educational Potential and Needs
        Fully and readily  Normal mentality;              Usually can fit into
        educable           minor disability               regular school program
        Fully but not      Normal mentality; moderate
        readily educable   or severe physical, sensorial, Need special education
                           or emotional disability
        Not fully educable Mild or moderate               Educational placement de-
                           mental retardation             pends on physical needs
        Not educable       Severe mental or physical
                           disability, or both            Need custodial care
           Table 12-Cerebral Palsy                   Table 13-Cerebral Palsy Case Finding
    Specific Indexes to Community Need for          Intensive Follow Up of "Vulnerable" Infants
              Strengthened Program                  Maternal disease (e.g., German measles)
    1. Occurrence of preventable types of           Erythroblastosis fetalis
 cerebral palsy                                     Severe fetal stress during birth
   2. Delay in diagnosis and reporting, es-         Neonatal anoxia, convulsions, etc.
 pecially before school age                         Small premature infants
   3. Errors in diagnosis
   4. Registered or known children who are           up in a timetable. The following time-
not under care
   5. Children under care, but with gaps in          table for all cerebral palsied children
components of total rehabilitation                   helps in program development and in
   6. Unnecessarily restricted educational
placement (home instruction, separate classes,
                                                     assessing the needs of groups of patients.
                                                     It should be individualized for seeking
   7. Unemployed cerebral palsied adults             continuity of effective supervision of
   8. Waiting lists for institutional care           each given child (Table 14).
   9. Excessive caseloads in existing programs          Because of the multiple handicaps of
   10. Incomplete geographic coverage               the cerebral palsied child, assessment
   11. Ineligibility of children because of race,   and treatment of each of his disabilities
economic status, or other reason
   12. Poor coordination of existing resources      is often beclouded by disturbance of the
   13. Substandard quality of existing services     usual avenues of communication, ap-
in respect to facilities or personnel               praisal, or care. For example, response
                                                    to physical therapy is lessened if the
suspicious history can be labeled as                child does not hear or understand the
"vulnerables" and be given more than                therapist's instructions. Schooling is
routine follow-up attention. Table 13               interrupted by frequent convulsions.
is an example.                                      Testing of intelligence by verbal or
   Cerebral palsied children carry their            manual methods is difficult in the
condition all their lives. As they grow,            presence of speech or hand disturbance,
their needs for help in treatment and respectively.
adjustment change. The general nature     Modification of usual methods be-
of their needs can be predicted from comes necessary and each profession
one age level to another and can be set obtains aid from nontraditional quar-

                                    Table 14-Cerebral Palsy
                                     General Timetable of Care
                                Reasonably prompt recognition
        At   onset    (birth    Intensive follow up of "vulnerable" infants
        or   later)             Interpretation to family
                                General health supervision (throughout)
        Periodically            Professional team evaluation and
                                  recommendation of plan of care
                                Specialized health supervision (throughout)
       Preschool                Parent counseling (throughout)
       years                    Consideration of readiness for therapies
                                  (physical, occupational, speech) and nursery education
                               Therapies (physical, occupational, speech)
       School    years         Education
                               Psychological and social adjustment
       Adolescence             Introduce vocational planning, counseling, and training
                               Social and recreational outlets
       Adulthood               Vocational placement
                                            CEREBRAL PALSY PROGRAM VOL. 44             163

                           Figure 1-Cerebral Palsy Diagnostic Center
                                   Role in Community Program



ters. Table 15 shows how testing diagnosis to enable the center staff to
the intelligence of the cerebral palsied keep their work on a sound basis
child calls for longitudinal study, atten- (Figure 1).
tion to cultural factors, observations by    Different auspices for the center are
other professional and lay persons, and possible, depending on the types of re-
individualized considerations.             sources in the region. Possible auspices
                                                 are: a hospital (especially a teaching
         Table 15-Cerebral Palsy                 hospital), the public schools, a resi-
 Aids in Assessment of Intellectual Capacity     dential institution for handicapped chil-
   Serial retesting-growth more significant      dren, or an independent (voluntary)
than single rating                               agency. In general, the hospital is to be
   Emphasis on physical, environmental, emo-     preferred in order to permit economical
tional, and social factors
   Observation of child's response to training   use of medical personnel and facilities
situations during treatments in home, clinic,    (Table 16).
and school
   Comprehension of language and child's           Table 16-Cerebral Palsy Diagnostic
ability to devise means of communication.                           Center
                                                 Basic Professional Team
  (Adapted from Charles R. Strother)                 Public health nurse
   The hub of the community cerebral                 Social worker
palsy program is the multiprofessional      Psychologist
diagnostic center which makes appraisal      Orthopedist or physiatrist
                                            Physical therapist
of disabilities and potentialities and      Speech therapist
recommends a plan or campaign of Additional Professional Workers
care, both immediate and long term.       or Consultants
Because of the varied types and loca-       Neurologist
tions of treatment needed, the majority     Psychiatrist
of patients seen at the center must be      Ophthalmologist
referred to community resources for         Otologist
care. A smaller portion of the patients,    Bracemaker
especially those living nearby, should be   Occupational therapist
given on-going treatment as well as         Vocational counselor
                                            Educator of exceptional children
                      Figure 2-Cerebral Palsy Diagnostic Clinic
                                 Example of Procedure
         Ten patients seen per session-screened before admission by medical referral
                           Individual Interviews and Examinations
  All patients seen by                            Selected Patients
    Pediatrician     10 Patients in 3 Hours       seen by
    Social worker 10 "           " 4      "         Speech therapist 6 Patients in 2 Hours
    Physical                                        Psychologist      5 "       " 212 "
      therapist      10 "        " 3Y2
 8:00      SOCIAL
           WORKER PHYS. PEDIA-
 9'00             THERA- TRICIAN
                  PIST                                 PSYCHO-
 10:00        I        I            I
                                          REFERRAL LOGIST
                                                                   SPEECH OTHER
                                                                   THERA- CONSULT-
             I         I                            __    I
                                                          t                      1!
                           __,                                     s
 1:00                            ABOVE STAFF AND:
           STAFF                   PUBLIC HEALTH NURSE
 2:00      CONfERENCE              ORTHOPEDIST
 3:00      SEES ALL                NEUROLOGIST, AND OTHER
    Moving from a single clinician to a       the majority of cerebral palsied children
 professional team requires coaching,         should be the day school. Some chil-
 training, signals, and ground rules.         dren will fit into regular classes and
 More often than not, the workers con-        others may be grouped with other types
 stitute the wrong kind of "interference"     of handicapped pupils. The last table
 for each other, with a consequent poor       gives criteria for admission to a special
 score. The care with which a diagnostic      cerebral palsy unit when such a facility
 clinic must be organized is suggested        is found feasible to set up (Table 17).
 in Figure 2.
    Medical and social factors play a            Table 17-Special School Unit for
 large role in determining most appro-                        Cerebral Palsy
priate educational placement. The ob-               Criteria for Admission of Children
jectives in educational placement are:
As normal an educational setting as pos-        1. Will the special services help improve
                                             his health or educational status? An estimate
sible; grouping of children for special      of prognosis should be made in terms of:
education and services rather than by          Ultimate outcome expected for the child
diagnoses; maintenance of children's           Immediate and long-term objectives for him
community and home ties; flexibility in        How much of his improvement may be ex-
change of educational placement; and              pected to develop spontaneously and how
medical supervision of health and med-            much would depend on special training in
                                                  the unit
ical services given in school.                 Estimated timing of child's progress
   While the diagnostic center is the hub      2. Can the special unit handle the child?
of the community program, the most im-       Indexes of this aspect of the problem include:
portant single resource at some time for       Transportation between home and school
                                               CEREBRAL PALSY PROGRAM VOL. 44                              165

  Facilities and space in the classroom and training to expect enough iidividuals to
     school                                     move on to specialized graduate work.
  The child's ability to handle himself per-       Much research is needed to fill gaps
  Availability of therapies needed by the child in our information. Nevertheless, many
  Behavioral problems of the child              cases of cerebral palsy can be prevented
  The child's educational adjustment            by more effective use of existing knowl-
  3. Will admission help the child or his edge.
family, or both, in the absence of actual im-                        BIBLIOGRAPHY
provement of his condition by:                   1. Barker, Louise S., Schoggen, M., Schoggen, P.,
  Providing recreational and social outlets for     and Barker, R. The Frequency of Physical Dis.
     the child                                      ability in Children: A Comparison of Three Sources
  Freeing the family during school hours            of Information. Child Development 23:215-226
                                                    (Sept.), 1952.
  The last group are limited objectives and 2. The Cerebral Palsied Child and His Care in the
must be recognized as such and plans should         Home. Prepared by Viola E. Cardwell. Cerebral
be made to deal with them constructively            Palsy Series: Revision of Pamphlet I. New York:
outside the special unit if possible.               Association for the Aid of Crippled Children, 1947.
                                                    (In process of revision.)
                                                     3. Deaver, George G., et. al. Manual of Procedures of
                                                           the Children's Division, Including Objectives, Phi-
   A number of principles need empha-                      losophy, Policies and Staff Functions of the Chil-
sis, as follows:                                           dren's Division. Rehabilitation Monograph IV. The
                                                           Institute of Physical Medicine and Rehabilitation.
   Specialized services stand or fall on                   New York: New York University-Bellevue Medical
the strength and soundness of the gen-               4.
                                                           Center, 1952.
                                                           Mackie, Romaine P. Crippled Children in School.
eral community- resources. For most                        Office of Education, Bull. 1948, No. 5. Washington,
                                                           D. C.: U. S. Department of Health, Education and
services needed by cerebral palsied chil-                 Welfare, 1948.
dren, greatest economy and effectiveness             5.    Manual for the Operation of Cerebral Palsy School
                                                           Units in New York City. Bureau for Handicapped
can be attained by caring for them to-                     Children. New York: New York City Department of
gether with other types of handicapped               6.
                                                          Health, 1952.
                                                          Perlstein, Meyer A. Infantile Cerebral Palsy, Classi.
children. Possibility of improvement                      fication and Clinical Correlations. J.A.M.A. 149:
can easily be oversold; therefore, goals             7.
                                                          30-34 (May 3), 1952.
                                                          Perlstein, Meyer A., and McDonald, Eugene T.
and objectives should be realistic.                       Nature, Recognition and Management of Neuromus.
   Treatments given to each child should                  cular Disabilities in Children-Round Table Discus-
                                                          sions. Pediatrics 11:166-173 (Feb.), 1953.
be carefully selected on the basis of his            8.   Realistic Educational Planning for Children with
                                                          Cerebral Palsy. United Cerebral Palsy's Educational
needs, readiness, and probability of                      Advisory Board. New York: United Cerebral Palsy
response. Giving all services to all                      Associations, Inc., 1951.
                                                     9.   Strother, Charles R. "The Psychological Appraisal
cerebral palsied children as early in                     of Children with Cerebral Palsy," Psychological
their lives as possible is not necessarily                Problems of Cerebral Palsy-A Symposium Sponsored
                                                          by the American Psychological Association and the
beneficial to them or likely to enhance                   National Society for Crippled Children and Adults,
the community program.                                    Inc. Chicago, Ill.: National Society for Crippled
                                                          Children and Adults, Inc., 1952.
   The chief bottleneck to more adequate            10.   The Study of Cerebral Palsy in Connecticut. Hart.
care is not funds, but qualified person-                  ford, Conn.: State Department of Health, 1951.
                                                    11.   Wishik, Samuel M., Klapper, Zelda S. Organization
nel. At present, recruitment is a                         and Function of Day School Units for Cerebral
greater problem than finding suitable                     Palsy. J. Exceptional Children 20, 4:164-175
                                                          (Jan.), 1954.
training facilities. Interest must be en-           12.   Wortis, Helen Z. Social Work in a Special Educa.
                                                          tion Program for Cerebral Palsied Children. Crippled
gendered during basic professional                        Child 30:18 (Apr.), 1953.